The costs associated with caring for the growing population of older adults with serious illness are high, and the quality of high-intensity care within this population is poor. While most patients with serious illness express preferences at the end of life that do not include aggressive care, the opposite commonly happens. Efforts taken to develop outcome measures that allow patients and clinicians to directly compare interventions designed to prolong life and avoid suffering could improve our ability to align care received with patient preferences, thereby improving the quality of care and potentially decreasing costs. The long-term objective of this research is to develop an outcome measure for clinical trials in older adults and patients with serious illness that incorporates both survival and avoidance of suffering. In this foundational work, we will perform qualitative interviews with patients to understand their perspectives on certain levels of disability that have previously been described as equivalent to or worse than death. Our interviews will examine key attributes of these “states worse than death”, determining not only which health states patients value as equivalent to or worse than death but also why. In addition, we will determine the acceptability of avoidance of such states as an outcome measure among older patients with serious illness.
Quartet Pilot Research Program funded by the Center for Health Incentives and Behavioral Economics at the University of Pennsylvania